Privacy & Ethics
Preserving privacy and maintaining robust data governance are of
critical importance to the CHeReL. All research projects
using linked data must obtain approval from the data custodians and
a human research ethics committee. The CHeReL also complies
with best practice in privacy preserving record linkage, adopting
the Kelman, Bass and Holman approach. This involves
separating the linkage of personally identifying information from
the analysis of de-identified linked health records. The
CHeReL holds and links personal identifiers only and uses a system
of numbered "keys" to exchange information with data
custodians. The CHeReL does not provide linked records
directly to researchers, as we do not hold health
information. Data custodians retain control of the
information that is provided to the CHeReL for linkage and for
provision of de-identified linked records to researchers.
This approach to preserving privacy and data governance has been
strongly supported by organisations that are custodians of health
records, human research ethics organisations, researchers and the
community. By providing a mechanism for researchers to access
de-identified linked data, the CHeReL enables ethically approved
research in the public interest to be carried out without consent,
minimising bias and allowing researchers to access data on whole
populations.
